Go Danish!

15 Aug

If you search around the web, you can find people suggesting other vaccine schedules than that used in the “overly aggressive” United States.

One you will find, promoted by the autism/vaccine advocacy group Generation Rescue doesn’t include any coverage whatsoever for Measles Mumps or Rubella. That is scary. Just plain scary.

They have others, though. One is “Go Danish”, with this little blurb:

Comment: Denmark is a first world country based in Western Europe. Their schedule appears far more reasonable than ours. They have also been reported to have a much lower rate of autism than the U.S. Do they know something we don’t?

They give the vaccine schedule as of December 2006. Hmmm, makes you wonder what it looks like now, doesn’t it? We’ll get to that.

Well, let’s look at the “recommended” “alternate” schedule based on the 2006 Danish schedule:

DTaP at 3, 5 and 12 months
Hib at 3, 5 and 12 months
IPV at 3, 5 and 12 months, plus 5 years
MMR at 15 months and 12 years

And, this supposedly leads to a lower autism prevalence. Take a look again–that means that giving 5 vaccines at once, three times in the first year of life doesn’t cause a high autism rate. It also means that MMR at 15 months does not cause a high autism rate.

With this on their website as a something to “consider”, shouldn’t they consider what this tells us? Again, assuming that the autism prevalence in Denmark is low, doesn’t this tell us that vaccinations given in combination, early in life, don’t cause autism “epidemics”? Isn’t it pretty clear that the MMR doesn’t cause “autism epidemics”?

The current Danish schedule is now somewhat modified from the 2006 one noted at the Generation Rescue website. They’ve added the pneumococcal conjugate vaccine (PCV) at 3, 5 and 12 months. That’s 6 vaccines at once 3 times in the first year of life.

That sounds like a lot of jabs for those little Danish kids…except that they use combination vaccines. Not just DTaP, but DTaPHibIPV. Wow, a five part combination vaccine. I don’t think this is what Generation Rescue had in mind when they suggested “Go Danish”.

They have also added the HPV (Gardasil) vaccine at age 12, but I really think the discussions of that vaccine have nothing to do with autism and just paint factions of the autism community as anti-vaccine, so I prefer to stay out of that discussion.

The combination vaccine (which I assume is fairly new) and the addition of the PCV vaccine will give groups like Generation Rescue a talking point if/when the autism counts in Denmark increase to something similar to the rest of the world.

But, let’s leave where we started, with the words of Generation Rescue, speaking about Denmark:

They have also been reported to have a much lower rate of autism than the U.S. Do they know something we don’t?

Apparently, the Danish know that multiple vaccines don’t cause autism. If we believe Generation Rescue, it looks like Denmark has the data to show it.

A Little More Left Rudder

14 Aug

I originally put together and posted this video (see end of post) at the beginning of the year at Autism street.

In the short seven months since that original posting, I’ve received several e-mails from a variety of readers expressing positive feedback about it. I’ve also had the opportunity to present it at a couple of conferences on a pretty large screen (something I enjoyed due to the increased visual impact). I’ve even received requests from others (parents and educators) to present it themselves in one form or another – simply because they were interested in presenting the idea of parenting autistic children in a more optomistic light than one might find in the mainstream media.

I’ll ask for my fellow LBRB authors’ indulgence in running a “repeat”, but I think there is a message here that bears repeating from time to time. Amidst all the media and internet coverage of autism, families need to know that their challenges are shared, and at the same time, know that expectations of success can be helpful. While specific successes are never guaranteed, I think flexibility and calm in the face of uncertainty can reduce stress – and probably improve family life overall.

I’d also like highlight something mentioned by commenter Prometheus – sage commentary if you ask me:

Ooooh!

It brought back chills from when I was first learning to do cross-wind landings.

It also brought back chills from when I was first learning to deal with a disabled child.

Good advice to all parents, especially those with an autistic child.

If I may extend your analogy a bit further, there is more than one way to do a cross-wind landing (and any landing you can walk away from is a “good” landing).

The worst thing to do is to freeze up – to say “I can’t do this”.

[Link in the comment by Prometheus was added] All this being said, please enjoy (and spread it around if you are so inclined). Here’s the video:

http://video.google.com/googleplayer.swf?docid=-2521787638543598212&hl=en&fs=true

Tags:

Kirby, wrong on the radio

14 Aug

First there was the world tour (well, to London). Then there was the national tour (well, around a day’s drive from NYC, or thereabouts). Now, we had David Kirby, live by phone on the radio!

The talk is broken into two hours. Mr. Kirby starts at about 50 minutes into the first hour. And, he doesn’t waste time. He instantly moves into getting it wrong.

First he says that anyone who thinks that the science is on the side of saying there is no link isn’t keeping up with the science. This is because (un-supported assertion coming up) “new stuff comes up virtually daily” coming in from major universities around the world.

Well, yes, new stuff is coming in daily from major universities around the world. There’s all sorts of stuff coming in on a multitude of areas, so, I guess he’s right. But, there isn’t stuff coming in daily to support the vaccine/autism concept. Take the last 5 years. With stuff coming in virtually daily, there should be over 1,000 “stuffs” (nice that he didn’t say “research” or “papers” or “results”, but “stuff”). Did anyone else listen to the Autism Omnibus? Did you notice over 1,000 stuffs being presented, or did you, like me, hear a few studies that may or may not support the idea?

OK, that isn’t a biggie. He moves on quickly into…come on we all can all guess….that’s right! Mitochondria! And, right off the bat, he gets it wrong.

He brings up that just yesterday from the UMDF (good group from what I can see) about the research from the Newcastle and Virginia Polytechnic Institute that Kev and Kristina noted recently.

Mr. Kirby mentions that the study noted that 1 in 200 have a “DNA mutation that may confer mitochondrial dysfunction” and “..this is exactly what Hannah Poling had when she got 9 vaccines in one day.”

OK. Now the facts. The study indicates a number of specific, measurable mtDNA mutations that might lead to mitochondrial disorders. Only one mtDNA mutation has yet been found with Hannah Poling–and this is not one of those studied in the recent paper. A major piece of David Kirby’s arguments so far has been that the mtDNA mutation that Hannah Poling and her mother have is benign. The dysfunction results, according to David Kirby’s interpretation of his source, is in Hannah Poling’s nuclear DNA.

As an aside, Mr. Kirby’s stance has been that the Hannah Poling type of dysfunction is inherited from the father (an apparent misinterpretation of it’s own). I bring this up to point out even more–David Kirby knows that there are major differences between the recent study and the kids in the upcoming 30-kid study that describes children with conditions similar to Hannah Poling (with the exception of any vaccine trigger, but that gets glossed over by Mr. Kirby too).

It is worth reading this comment yesterday from Prometheus.

One thing he notes is that a number of the people identified in this study had mtDNA mutations linked to Leber Hereditary Optic Neuropathy (LHON). You don’t have to go farther than the name to realize that an “optic neuropathy” isn’t “exactly what Hannah Poling had…”

Do I dare listen to hour two?

Mitochondrial Disease in the news again

13 Aug

Before I start I want to thank Prometheus who explained this in as plain language as he could. If I’ve made any errors then they’re mine, not Prom’s.

OK, so, as Kristina has already blogged, Mitochondrial Disease has raised its head into the autism world again. A new study has reported that prior to previous thoughts of a prevalence of 1 in 5000, it may actually be as high as 1 in 200.

Of course, that has also prompted a HuffPo post from David who wants to bring our attention to the fact that there are no studies that say that vaccines don’t cause mitochondrial disorder and hence (with the right sort point mutation) autism. David states that prevalence estimates range between 7 and 20% for mito causing autism. That’s not actually correct. In terms of published science its between 4 and 7%. There are suspicions amongst some researchers that it may go as high as 20% but nothing is published yet.

But back to this new study. David _seems_ to be implying that 1 in 200 people with mito disorders means that between 7 and 20% of 0.5% (1 in 200) of people have mito induced autism (0.001% if we go with David’s unpublished 20%).

But that is not the case. This study is not claiming that 1 in 200 people have a mitochondrial induced _illness_ . It is saying that:

In conclusion, at least one in 200 healthy humans harbors a pathogenic mtDNA mutation that potentially causes disease in the offspring of female carriers.

Key phrase – ‘in the offspring’.

According to the UMDF (United Mitochondrial Disease Foundation) there is only a 1 in 4 chance that even two parents who share the same gene mutation (autism in our case) will produce a child affected with the disorder.

So are the study authors claiming that 1 in 200 could have a mito disease? No, they’ve shown that one in 200 people has _a_ mutation in a mitochondrial gene that (_if_ it were homozygous – could lead to a disease).

So, to establish prevalence for a single gene (which theoretically induces autism in our example) we are looking at:

0.005 * 0.005 * 0.25 = 0.00000625 (1 in 160,000)

(0.005 is 1 in 200. 0.25 is 1 in 4).

Thats quite a lot different than 1 in 200.

Reading the study, you’ll find that what the authors found was that 15 of 3168 (0.47%, 1 in 211) newborns they studied had one of ten types of mutation seen in mitochondrial diseases. Of these 15, the authors were able to find 8 maternal blood samples to determine if these were new (de novo) or inherited mutations. Of the eight, three of the mutations (37.5%) were not seen in the mother’s mitochondrial DNA, suggesting that they were new mutations.

Taken altogether, this suggests that – had maternal blood samples been available for all fifteen children with mitochondrial DNA mutations, that 5.6 of them (0.17%; 1 in 568) would have been new mutations.

Note that none of the newborns – even those with mutations in their mitochondrial DNA – and *none of the five mothers who were found to have mitochondrial mutations were reported to have mitochondrial disease*. What the authors mention as their concern is that couples considering having children be made aware of the risks of mitochondrial disease and that testing for the more common mutations leading to mitochondrial disease be available.

Bottom line: having the mutation does not equal having the disease.

This is an unbelievably complicated area. We’re talking as lay people about an area even the experts talk about as barely mapped out. I am not suggesting David intended to mislead people with the 1 in 200 figure I merely want to highlight the fact that it is not as cut and dried as that.

If you liked this post, thank Prometheus. I could not have written it without his generous help.

Katie Couric, Sharyl Attkisson, Larry King, and Dr. Jay Gordon

12 Aug

As you may recall, I faxed Katie Couric a while back making some comments and asking for some information.  I find that the CBS coverage of autism is, well, a bit odd.  Sharyl Attkisson seems to be promoting an idea, not following a story where it leads.  The main example I give for that is the total lack of a followup to the assertion made by Bernadine Healy that “[t]here is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people.”  Who, precisely, aside from Dr. Healy expressing this concern?

The Voices For Vaccines fax which preceded mine was posted an autism/vaccine advocacy website within hours of being sent, begging the question of who within CBS news sent it, and why there is such a close tie between the two.

Anyway, I shouldn’t rewrite the entire previous blog post–the short version is: I had questions.  I still do.  That’s right, I still do.

I’m not complaining, just pointing out a simple fact: CBS didn’t take the time to respond to simple questions about their reporting.

Now, take a newer event in the autism world.  In preparation for the Every Child By Two press conference last week, some comments were made on the Yahoo group dedicated to the “Green our Vaccines” rally.  One comment in particular by Dr. Jay Gordon struck me as rather bothersome.   The comment was directed at a person named Avrielle Gallagher, who works for Larry King Live.

Being in the mode of wondering about how the media works, especially those apparantly sympathetic to the vaccine/autism causality question, I decided to contact Ms. Gallagher.  I sent the following email to the same address Dr. Gordon used.  For good measure, I used the Larry King Live website to send the same message:

Hello,

I saw an email from Dr. Jay Gordon to you.  It was posted on the JennDCRally autism list.  The email is listed below.

Could you explain what is meant by the term, “[redacted]?  I see that you work for Larry King Live.  Is he asking you to do a show on the conflicts of interest of these groups?

If so, perhaps you would like to read a few analyses of Dr. Offit’s conflicts of interest.  I looked into the public data and posted my views here:

https://leftbrainrightbrain.co.uk/?p=1022

I rewrote this and faxed it to Katie Couric of CBS, as noted here:

https://leftbrainrightbrain.co.uk/?p=1057

As you will see, I am not in agreement with Dr. Gordon.  You will also see that I am the parent of a young child with autism, one who does not subscribe to the autism/vaccine concept.

Rather than “[redacted comment]”, I would like you to consider going after a good, reasoned story.  I would especially like to see a good, reasoned story on the subject of Dr. Offit’s new book, “Autism’s False Prophets”.   This is causing quite a stir amongst the alt-med subset of the autism community.  They have publicly stated that they have targeted Dr. Offit and those are also promoting vaccination (like Amanda Peet).

As you will see from my posts, Dr. Offit appears to have no more financial conflicts of interest regarding vaccines.  He is actually in a position of high independence.  And, yet, he still promotes the same message as before.  That should tell us all something.  In addition, his book is going to be a big story.

So, I ask a simple question: will you go after the story or the person?

I look forward to a response.

I’m still looking forward to a response.  I’m an optimist that way, I guess. 

Oh, you are no doubt wondering why I redacted Dr. Jay’s exact words.  You see, after a bit I decided to email him.  I admit, I should have emailed him from the start, but I did wait a few days.

Dr. Gordron, I saw the below message from the JennyDCRally autism group.

If I may, could I ask what you mean by “[redacted].”?

Given that Avrielle Gallagher works for Larry King Live, this sounds like you are asking for Larry King to do a show about these people in a poor light.

I am the parent of a child with autism.  Surely you can see that the image of the autism community (or segments of the autism community) as a group that would use the media to “[redacted]” is something that I would like to avoid.  While we as a community may be divided on some issues, I would bet that the majority would agree that we rely heavily on the support of the majority of the public.

I look forward to your response.

Sullivan

Even though I misspelled his name, he responded within a couple of hours:

Thanks.

You’re correct, that was very poorly phrased.

What I meant was that there should be more light shined on the financial conflicts of interest which exist.

Jay

(emphasis his)

When I notified him that I intended to include his comments in this piece, he replied:

Dear Sullivan,

The first statement I made reflected my anger. I really do think there is far too much conflict of interest in the lives of many of the vaccine researchers, the CDC and the AAP.

The brief email answer I sent you reflects my true feelings about this.

Please feel free to quote me and, if you do, please also mention that I certainly don’t think that my being immoderate in my comments helps anybody.

Best,

Jay

Dr. Gordon did what Katie Couric, Sharyl Attkisson, Avrielle Gallagher, and the staffs for CBS News and Larry King Live failed to do: answer simple and (I hope) respectfully posed questions.

I could give a long list of the people who have answered simple, sometimes even complicated, questions, respectfully posed. I’ve been very fortunate in that regard. I would have loved to add CBS News and Larry King Live to the list.

It all just makes me wonder. CBS News and Larry King have spent decades reporting on how this person or that company or some group in the government ignored questions. Invariably, those reports cast a bad light on the groups investigated. And, yet, when presented the opportunity to clarify their own actions, they chose to be silent.

Maybe I’ll send a respectful question to Voices For Vaccines and ask if CBS News responded to their concerns. I know that CBS took the time to respond to the Orange County Register’s blog on Autism.

In their reply to the Inside Autism blog, CBS News noted:

…We believe our report was in no way defamatory of any institution or individual, and that no retraction is warranted…

As I’ve noted before, I like the irony of CBS News deciding for itself whether it was defamatory. Strikes me odd given the complaints alleged against, well, basically everyone the vaccine/autism groups have ever complained about.

But, I digress. I’d like to point out that I didn’t claim CBS was “defamatory”. I only bring this up to point out that even though CBS communicated with the Register blog, they haven’t addressed my questions.

A commenter on the Register’s blog said it best in her response to Lisa Randall of Voices For Vaccines. The Register’s blogger decided to highlight the comment, and I pull out the segment that caught my eye here:

…We expect the press to tell us the truth…

The first step is to tell us anything.

Never go full Hollywood

12 Aug

There’s a big debate going on at the moment about a new film soon to be released called ‘Tropic Thunder‘.

The premise of the film is three self absorbed actors who are filming a war movie, it looks back at the actors careers in various ways to see how they come to this low point of their careers. Or at least thats the impression I got.

Ben Stiller plays a character who once played a character in a different film called Simple Jack. There is a faux movie poster for Simple Jack

Simple Jack poster

Simple Jack poster

which has the strapline:

Once upon a time….There was a retard.

Later on in the timeline of Tropic Thunder, this conversation takes place between Ben Stiller’s character and Robert Downey Jr.’s character:

Now, I’ll be honest and say that I believe that in his head when he was writing this, Stiller probably thought that this would be a funny little tweak at certain actors who take their craft a wee bit seriously.

Unfortunately, it really doesn’t come across that way. It comes across as Stiller grabbing at a bit of Farrely Brothers tastelessness in order to make people laugh at the word ‘retard’ and in turn his own characters lack of acting skills.

There’s a fascinating discussion of the film and the controversy here which is very revealing. The host starts by asking her interviewee if he was shocked that seeing a white man portray a black man wasn’t expected to be the shocking thing and the interviewee saying, yeah you would expect people to be shocked by that.

The interviewee then fills in watchers on the ‘Simple Jack’ backstory saying,

The joke is that he went so far in trying to play a………uhh…..play a………

and the host breaks in:

Come on! You can say it.

The interviewee states later:

I’m sorry, it may be a derogatory word but kids, kids of all, I used it when I was a little kid. I don’t think its something thats ever done in meanness.

That YouTube clip has two comments. The second one reads:

Playing a retard is Oscar gold. I have seen the clips – everything was fine. We can’t go banning every fucking word that offends every retard out there.

So, its OK to be shocked by a white man playing a black man. But its not OK to expect people to be shocked by people referring to other people as retards?

To me, there’s two things wrong with using the word ‘retard’ in this way. Firstly, to use it where it doesn’t apply automatically infers that it is a term for something that is ‘not right’. I hear Americans say all the time ‘that’s retarded’ to refer to something they consider wrong or ill thought out. Secondly (and building on this) I understand that the phrase ‘mental retardation’ is a medical diagnosis for people in the States. The phrase over here is ‘learning disabilities’.

I want to state this clearly as I can. As a species we cannot go around making value judgements on who, due to their mental or physical differences, is deserving of being thought of in a positive or negative light. As soon as we start doing that, we immediately devalue these peoples humanity. Its very, very easy to attack someone when you think of them as being part of a labelled group who are inferior to you in some way.

Pretending that the word ‘retard’ is not used as a put down or ‘in meanness’ is at best naive and at worst, deliberately deceptive.

One thing that neither the film, or any of the commentators I’ve read so far have considered is _why_ ‘playing a retard is Oscar gold’. I’ll tell you why. Because when its done well, it reveals the humanity, skills and desires of someone who is another human being sharing the planet with everyone else. That’s what acting is about isn’t it? Bringing out a characters humanity and letting us, the audience seeing them?

When its done poorly, as I suspect it is in this film, all that happens is that a group of people who are already bullied and called named can expect more of the same as the bullies have seen Ben Stiller and Robert Downey Jr doing it and think its OK to do so.

ASAN have produced a video response to this film.

When jobsworth's attack

10 Aug

Jobsworth: UK Slang.

It’s been a rough old time to be autistic or the parent of an autistic child just lately. You could get voted out of your classroom, or you could get thrown out of a restaurant, or for the extra special prize you could be one of some jackass DJ’s 99% of autistic kids who are faking it.

Now, not wanting to be left out, Quantas are having a go at being as obstructive and generally stupid as they possibly can to autistic people.

Three Waikato families are facing a bill of $33,000 after three dogs being brought to New Zealand to help autistic patients were banned from a Qantas flight in Los Angeles.

The families had spent two years raising funds to bring the dogs to New Zealand.

Sonya Ewens, whose six-year-old son Sloan got one of the dogs to help with his autism, said they were “devastated”, the Waikato Times reported today.

She said they were still raising the last $6000 for the original fare and the thought of another two years fundraising “is really too much.”

$33k of NZ dollars is US$23,248, CAN$24,809, UK£12,105 or €15,478. Whatever way you cut it, its a lot of money.

What is it about autism that seems to bring out the worst in people? Time and again we hear stories of people being downright cruel pretty much for no good reason. And then when the story breaks they all start a tasteless game of pass the buck. Quantas blame American Airlines blah blah blah….none of which is going to help these kids get their service dogs.

Quantas – be decent. Its money. Waive it.

GFCF Double Blind Study

9 Aug

Washington, Aug 8 : In one of the first double-blind, clinical studies, scientists at The University of Texas Health Science Center at Houston will be seeking to determine if gluten and dairy products have a role to play in autistic behaviour, as has long been claimed by parents.

Source

This should be interesting.

Personally, I don’t have much of an issue with the GFCF diet, aside from the lack of evidence supporting it. Regulating someone’s diet is nowhere near as dangerous as chelation or Lupron injections or industrial cleaner being marketed as chelators. But maybe a nutritionist will correct me on that.

I am a little bit worried about a statement attributed to one of the study authors:

A lot of children with autism have gastrointestinal problems such as constipation and diarrhea.

Do they? Is there any actual evidence beyond the anecdotal that backs that statement up? I can’t recall seeing any myself. Not that I’m omniscient on the subject you understand.

We tried our autistic child on the diet shortly after xyr diagnosis and it did absolutely nothing. But then I think we misunderstood it. Xe didn’t have any diet or gastro issues to begin with. We were still in that rather naive ‘must cure at all costs’ phase and there was only a small handful of websites dedicated to autism or autism treatments. Indeed, one of the things that amazes me is how autism has become something of an industry over the five years or so.

Anyway, I’ll be interested to see how this one pans out. How ’bout you?

Britney Spears thinks son might be autistic

8 Aug

I can’t believe I’ve linked to stories about so many Hollywood stars (and Jenny McCarthy) lately but here we go again. Apparently, Britney Spears thinks her son Jayden might be autistic.

Compared to his big brother, Sean Preston, little Jayden “often seems to be in his own world,” family friends say.

“He plays alone a lot,” an In Touch Weekly snitch says. “Jayden often starts crying for no apparent reason,” a friend of K-Fed’s adds.

Um, well, apart from the first statement, I don’t see any red flags for autism. No ones mentioned a lack of eye contact or slow development (or none) of communication skills. On the other hand, it may well explain why Britney turned up at a Gen Rescue gig recently.

I’m not going to get into a Britney-bash. She’s been touted as a manic depressive and us loons have to stick together. I will mention however, that from what I’ve seen on TV, the Spears/Federline children have not had an easy ride of it lately and maybe these ‘symptoms’ might go away if mum and dad grew up a bit and stopped attacking each other publicly. Might also help if every tabloid in the entire Western hemisphere backed off and gave Spears some room to sort both herself and her kids out.

So, if Jayden does get diagnosed (who by? Lets hope its not Jay ‘Polio can be cured by not eating cheese’ Gordon) will she go down the anti-vaccine route? Has the lad even _been_ vaccinated?

I expect she will as she’s already been co-opted by McCarthy and GR. That means we have lots more celeb induced silliness to put up with and even less emphasis on science. Woo-hoo.

Things happen or do not happen….

8 Aug

Things happen for reasons.

For some reason there happened to be invisible kangaroos standing on either side of the street as I walked this morning at 6 a.m. They were waiting for me to pass by them so that they could wave their hats and cheer.

Although I could not see them I knew that they were waving their fore –arms (or legs) at me as high as their kangaroo limits could allow them.

There must be a reason for sure why they chose me out of the millions of people who inhabit the world!!!

So I tried to maintain my Titoistic pride by flapping my hands – sometimes my left hand, sometimes my right hand, sometimes both hands– depending on the thickness of the invisible kangaroo crowd in my most dignified manner. I tried my best to acknowledge their presence that remained invisible because of their transparent skin, muscles and bones. (You cannot just deny something because they are transparent).

And something told me that there was a transparent cross-eyed kangaroo stepping behind me, hopping with her charming kangaroo -gracefulness with a basket of delicately chosen flowers from her invisible garden.
I needed to slow down for her sake and that was something mother would not understand.

“Tito, stop turning back and hurry. I need to cook breakfast!” for some reason she would not believe that there was this invisible cross-eyed kangaroo trying to keep up with me with her basket of delicately chosen flowers, hopping with kangaroo-gracefulness.

“What if she showed up?” I think I had a good point there. But she did not happen to show up.

Things do not happen for reasons.

–

Tito Rajarshi Mukhopadhyay

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